My name is Reagan Grace Williams. I was born on Feb. 15, 2007 with a congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia and MAPCA's. I also have DiGeorge Syndrome which not only affects my heart but my immune system as well. I am only one in about 350 babies a year that are born with all this.
When I was born I spent 10 days in the NICU before the docs let my parents, Rod & Jennifer, take me home to meet my big brother Nolan.
At the age of 2 months, I suffered two embollic strokes while at home. My mom had to call 911 & I was taken to the nearest ER and then taken by helicopter to Dell Children's Hospital in Austin, TX. I spent 12 days in the PICU and then was able to return home.
When I was 4 months old, I traveled to Lucile Packard Children's Hospital at Stanford in Palo Alto, CA for my first open heart surgery. Dr. Hanley (the top surgeon in the world for this type of corrective surgery) performed a unifocalization of my vessels. I spent 6 weeks in the hospital recovering. When it was time for me to go home, I was only able to spend 2 days at home before being taken back to the hospital and once again riding the helicopter to Dell Children's. I then spent another 8 weeks in the hospital for a staph infection in my sternum & bloodstream. I had to go to surgery where they re-opened my sternum and dug out the infection that had attacked my sternum & then a wound v.a.c. was placed over my sternum to promote healing. I received i.v. antibiotics for 6 weeks through a PICC line while in the hospital. At the end of this hospitalization, due to G.I. issues that started after my first heart surgery, I had another surgery to get a g-tube & nissen fundoplication. I have fed from the g-tube ever since.
In Jan. 2008 I was due to go back to LPCH for my second heart surgery. Three days before boarding the plane my parents had me in the ER and I was admitted to the PICU with RSV. I spent 10 days there and then returned home.
In Feb. 2008, I celebrated my first birthday. 6 days later I flew to LPCH in California for my second heart surgery where Dr. Hanley performed a revision of my unifocalization and replaced my shunt with a larger one. I spent 8 weeks in the hospital recovering before I was able to return back home to Texas.
Once home, I was able to enjoy the comforts of home for almost a month before I returned to Dell Children's with pneumonia. The pneumonia kept me in the hospital for 4 weeks.
In October of 2008, I returned to LPCH in California for my 3rd heart surgery. During this surgery, Dr. Hanley revised my unifocalization once more and then performed a sliding bronchioplasty on my left mainstem bronchus. Thanks to this surgery, I was able to get off oxygen and maintain my oxygen sats in the 70-80s. I stayed in the hospital for 5 weeks in CA and then 2 weeks in TX. I then was able to stay out of the hospital until May of 2009 when I returned to CA once more. This was the longest time I have been able to stay out of the hospital since my birth.
When I returned to CA in May, following my heart cath, Dr. Hanley decided it would be better not to perform surgery at that time. Thankfully, my vessels looked good and did not need any more intervention but unfortunatley, my lungs were not in the best shape and could use more time to hopefully regenerate new lung tissue before going through another surgery.
I am now home with my family and enjoying my time until I have to return to CA for another cath in May of 2010. During this year, I hope to learn to walk, talk, eat and grow new lung tissue so that I can have a complete repair of my heart in the future.
My parents properly named me as my middle name is "Grace" for it is only by the grace of God that my family and I have survived all this! It has been a long journey and we still have more to go but God has always carried us through the good & the bad times. We thank you- our family, friends & even strangers, for your support along the way!
